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The Maine Event: CDC and DHHS Host Groundbreaking Autism Conference for Doctors

Progress By Ginger Taylor, MS

On Tuesday, May 12th in Augusta Maine, the Maine Center for Disease Control & Prevention, Department of Health & Human Services, the American Academy of Pediatrics - Maine Chapter, the Maine Medical Association, the Maine Osteopathic Association, the Maine Emergency Medical Services, the Autism Society of Maine, the Downeast Association of Physician Assistants, national figures in autism research, causation and treatment, state developmental pediatricians, state DAN physicians, biomed parents, non biomed parents, and autism treatment and therapy providers of all kinds met to do something that has never been done before in this country.

Listen to one another.

Maine has always been one of the most progressive and no nonsense states in the US, and they proved it again this week by casting aside the fear of what might happen if we talk openly about even the most difficult of all the autism issues to forge new ground and dare to initiate new partnerships in serving people with autism.

THIS is the conference I have been waiting for.

THIS is what should have been happening all along.

Read the description of the conference from the Maine CDC web site HERE:

Autism: Bridging the Gap Between Knowledge and Practice for Clinicians

Rationale:

Autism, including its possible causes and treatments, is a highly-charged, polarizing subject within the medical, public health, and even the autism community. Maine CDC/DHHS is hosting a medical conference to provide an update on the latest science on possible causes, diagnostic tools, and treatment of autism. The conference will feature several national researchers, Maine treating physicians and an interactive format, allowing the Maine clinical community an opportunity to ask questions and discuss issues with presenters. Some areas that will be covered include some of the murky areas in causes and treatment of autism, particularly those treatments that parents embark on with or without the knowledge, guidance or approval of the child’s physician. Examples include DAN, special diets, and avoiding vaccines. By addressing these more controversial areas, we hope to address one of the overall goals of helping to break down the barriers between physicians and parents in order to ultimately provide more comprehensive and collaborative care for children with autism

Primary Audience

Pediatricians and other primary care clinicians who care for children Objectives

By the end of the conference, participants will be able to:

•    Describe the trends of autism (Autism Spectrum Disorders = ASD).
•    Identify the first signs and symptoms of Autism.
•    Explain when and how to refer for specialized diagnostics.
•    Apply universal autism screening with recommended tools.
•    Describe the use of the AAP Autism Toolkit.
•    Describe what is available for diagnostic and therapeutic services in Maine.
•    Define co-morbidities to autism and ways to effectively identify and treat them.
•    Identify effective strategies to address some of the challenges parents and children with autism face in clinical settings.
•    Discuss the newest research on the causes of autism, including genetic and environmental theories.
•    Discuss the newest research on the treatments of autism, including those that are commonly used by families, but not necessarily widely accepted by the medical community.

Conference Agenda

8:00    Registration, Networking, Coffee

8:30    Introduction and Overview of Autism in Maine
Dora Anne Mills, MD, MPH

9:00    Autism 101
Carol Hubbard, MD
Victoria Dalzell, MD
Mary Ellen Gellerstedt, MD
Don Burgess, MD
First signs and symptoms, Maine’s new screening tool, how and when to refer for specialized diagnostics, how a diagnosis is made, AAP Autism Toolkit, diagnostic and therapeutic services in Maine.

11:00    Keynote by Tim Buie, MD
Gastrointestinal and Nutritional
Co-Morbidities in Autism, followed by Q&A

12:30    Lunch – Voices of Autism

1:30    Keynote by Martha Herbert, MD, PhD
Genes and Environment, Developmental and Chronic: An Inclusive Approach to Autism Science, followed by Q&A

3:00    Keynote by Jon Poling, MD, PhD
Looking Forward Beyond Vaccines: How Do We Know What Autism IS NOT if We Do Not Know What Autism IS? Followed by Q&A with other conference speakers.

Speakers

Timothy Buie, MD
Pediatric Gastroenterologist
Massachusetts General Hospital
Harvard Medical School

Don Burgess, MD, Pediatrician
Past President of the Maine AAP
Southern Maine Medical Center

Victoria Dalzell, MD
Developmental-Behavioral Pediatrician
Maine Medical Center

Mary Ellen Gellerstedt, MD
Developmental-Behavioral Pediatrician
Eastern Maine Medical Center

Martha Herbert, MD, PhD
Pediatric Neurologist
Massachusetts General Hospital
Harvard Medical School

Carol Hubbard, MD
Developmental-Behavioral Pediatrician
Maine Medical Center

Dora Anne Mills, MD, MPH
Director, Maine Center for Disease Control and Prevention
State Health Officer

Jon Poling, MD, PhD
Neurologist, Clinical Assistant Professor
Medical College of Georgia
Father of child with autism

You did see that last name on the list, yes?  Poling.

This conference came to be because of a friendship between two women who had children around the same time.  Dr. Dora Mills, the head of Maine CDC, and Becky Grant-Widen, board member of the National Autism Association.  Dr. Mills and Becky worked together many years ago, when Becky was working for the American Lung Association, testifying before the state legislature together on an anti smoking bill.  Their relationship was put to the test a few years later after Becky’s son was diagnosed with autism and the two women found themselves testifying against one another on thimerosal legislation. 

But at the conference Dr. Mills told her autism story.  That in Medical School she was told that autism was rare, around 4 in 10,000, but that of her and her three friends that were pregnant at the same time (her niece, and her best friend from medical school, and Becky) her child was the only one NOT diagnosed with autism.  Dr. Mills explained that for her, the autism rate was not four in 10,000, it was three out of four.

So last year she and Becky began talking in earnest about what was going on in autism, and Becky’s concerns for the disconnect between parents who treat their children biomedically and their primary care and developmental pediatricians.  So Dr. Mills decided it was time for their conversation to expand to include everyone in the state who is concerned with autism. 

She put together a steering committee which included professionals from Maine CDC and AAP, Maine ASA, the state developmental pediatricians, biomed parents, and even one of the CDC and AAP’s sharpest critics on vaccine issues, Me.  Quite a fearless move on Dr. Mills part as Maine’s chief vaccine advocate.

There was common agreement on who two of the three keynote speakers should be, as all involved had deep respect for the work that Dr. Tim Buie and Dr. Martha Herbert have done for our kids.  But then the parents asked that Dr. Jon Poling, the Johns Hopkins Neurologist whose daughter regressed into autism following her 18 month vaccinations and who is being paid for a vaccine injury in the VICP, be invited to present on vaccine causation.  That fear began to creep back in. 

But the fear was not of the things that Dr. Poling actually espoused, but what had been written about what he espoused.  Dr. Mills spent a little time researching and told the committee that as far as she could determine, Dr. Poling and Julie Gerberding were actually saying many of the same things, and thought we should hear from him directly instead of making assumptions about what he might say.

And as reasonable a position as that was to take, that is actually a revolution in the vaccine wars.  To show no fear, listen to people’s ACTUAL positions, and work together to find out what the truth is in all this, rather than allowing media filters to pigeon hole people and distort their messages.

So what began as a somewhat wobbly partnership of people who have been at odds with one another, ended up bearing truly amazing fruit.

What happened on Tuesday in Maine was what Bernadine Healy was asking for when she said that:

“…we haven’t connected.  So I think part of what’s missing here, we’ve got to stop all this battling and we’ve got to honor each other’s perspective…”

To say that the conference went well would be a huge understatement.

Autism was not framed as one psychological/behavioral disorder, but as “Autisms” of varying biological origins.  Autism was treated like a medical disorder and our kids as ‘sick children’ who need individual investigation and customized medical treatment.

It was heavy on the research and individual experiences of clinicians and light on the speculation.

Mainstream Pediatricians got to share what they do like about DAN treatments and what they are concerned about.  DAN docs got to share a few of their methods and what they are seeing.  There was debate, but it was respectful and earnest.  People were real.  And one mainstream ped asked for greater communication between the two groups so that continuity of care could be stronger.  It was music to my ears.

Dr. Tim Buie is quite beloved in Maine as many docs send their kids to him down in Boston, and to hear him talk to a hundred Maine medical professionals about which diets might help which kids and show video of extreme behavioral problems that were alleviated with GI treatment was a huge relief.  Finally!  They can hear someone they trust talking about the gut brain connection and see things that would seem to have NO relation to intestinal issues actually can.

It was a bit of an out of body experience to watch a state chief public health official hug Jon Poling on stage after his speech.  And then see him hang out for more than an hour after the conference was over talking to and connecting with (and laughing with) Maine CDC and AAP docs (even some who were afraid to let him on the bill in the first place) felt like watching chunks fall out of the Berlin Wall.

And the conference even had that “come to Jesus moment” that Dr. Healy was looking for on Larry King.  After Martha Herbert’s very powerful presentation on gene/environment interaction, Dr. Mills, coming to tears, joined her at the podium and told the crowd that she had just experienced a monumental paradigm shift, as the audience responded with a standing ovation.

I sat with Harry and Gina Tembenis who lost their son Elias to his vaccine induced autism and seizure disorder.  Every 15 minutes Harry would turn to me and say, “Did you hear what they just said?  I can’t believe this is a CDC event!”

Beyond that I am not going to share what was discussed, because I want you all to watch the conference for yourselves.  It has all been recorded and the video will be available on the Maine CDC’s web site in about two weeks, and on DVD.  I will of course alert the masses when it becomes available, and encourage you to send it to all your docs, peds, autism professionals, public health officials, media contacts and your grandma.

But I will share with you an excerpt from a thank you note that I sent to the rest of the group that put this conference together:

“On a personal note, seeing a room packed full of autism and health professionals hang on every word of a long demanding speaking schedule that addressed toxic triggers has done more to melt my cynicism than anything has done in a long time.  Looking out on the crowd I had hope for the first time in ages that we parents might not be alone in our fight forever, and that I may get to stop having to be a doctor and a lawyer and journalist and an activist and the town crier and just get to be a mom to my boys.

I have long recognized that my role in this community is to be the challenger.  To guide (and sometimes push hard) people toward what is needed or being neglected.  It was an incredible experience to spend the day with divisions of CDC and the AAP, whose parent orgs I have been sharply criticizing for years, and to NOT have anything critical to say!  To see people getting it right.  For there to be no BS to have to call out and enjoy watching doctors and parents learn from one another and connect with one another.”

I don’t know where things will go from here in Maine, but I don’t think they will be the same again.  I am sure that we are not all in the same place yet, but I think big chunks of ground were closed in the gap between “us” and “them”. 

Most importantly the fear gap was closed, so the conversations that need to happen can start to happen.  What I can say with confidence is that the ice has been thoroughly broken.

I believe that change will come at the state level for two reasons.  Because it is the states and their school systems that are going broke paying to support our kids, and because in the states, real face to face relationships that melt disputes and lead people to look for common ground can take place.

So let’s hope they are right when they say, “As Maine goes, so goes the Nation”.

(And for the record, Dr. Mills invited Dr. Paul Offit to come sit on a vaccine panel with Dr. Poling, however Ofitt declined the invitation citing a busy schedule.)

Ginger Taylor is a Johns Hopkins educated family therapist with a current case load of one, her son Chandler who is living with autism. She blogs at AdventuresInAutism.com.

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Dr. Dora Anne Mills and the physicians involved in the meeting deserve alot of credit for allowing this meeting to be. It was an amazing day.

As a T.S.S. and developmentalist this is encouraging. I pray for clarity of thought.

This brings me great hope. One of the biggest frustrations for me is seeing doctors following blindly and pretend to practice "evidence-based medicine". Look at the evidence! Our kids are sick!

Best news I've heard in a very, very long time. Despite what the Vaccine Court ruled, REALITY rules in Maine. My thanks to all the hard-working parents and advocates who made that event possible. May similar ventures spread and succeed across our country and planet.

It's passion that brings change. It's investing your time that brings change. It's courage that brings change. My hat is off to Ginger. Let this be a blueprint to all.

Hi everyone the news of the meeting sounds promising. However do not let that dissuade you from your mission of getting your child better AND GETTING YOUR CHILD BETTER IS THE MISSION. That being said there are a couple of things that I have become aware of and will be starting on my VACCINE INJURED CHILD and patients in my own clinic. I promised myself and God that I would keep people informed and help them. A physician by the name of Paul Cheney who is a world famous clinician that has worked extensively with chronic fatigue patients that are also injured by viruses has found a way to increase intracellular glutathione. This is HUGE as the great injury to our children is the inability to either manufacture or regulate glutathione production. Everyone knows about glutathione's antioxidant properties but what is really the screamer here, and what I did not know from my previous reading is that glutathione has immensely powerful antiviral properties, so much so in fact that when the levels of glutathione are low this encourages and promotes viral replication. This may explain why so many of our children have issues with elevated HHV6, Lyme disease and EBV and CMV. Paul Cheney’s answer is UNDENATURED WHEY PROTEIN. Whey protein is the other 20% of bovine (cow) protein and does not react with our children like casein and therefore is not only safe but therapeutic as it raises intracellular levels of glutathione by increasing the precursor N-acetyl cysteine which was previously accomplished only by intravenous administration of Glutathione via chelation, which my child is also getting. Oral glutathione is poorly absorbed and typically destroyed by gut enzymes.
I will also be starting my child on Isoprinosine and immune modulator that is available outside the US in Canada. My previous pediatrician who has been at this for 25 years has just recently (two weeks ago) started all of his patients on it. I prescribed and bought my first 100 pills today for my daughter. The dose is 1 tablet 500mg twice a day she is about 18.8kg or 40 lbs and the medicine is weight dependent. You should read about this on the internet and ask your physician about it. Isoprinosine is an extremely safe and non toxic drug that is a purine nucleoside that supports and strengthens the immune system, the most common side effect is a transient increase in uric acid and therefore would impact people at risk for acute gout attacks, which is extremely uncommon in children. Talk to your physician and educate yourselves. I will keep you informed of her progress. Good luck to you all

Having attended the event, I can honestly say it was like attending an autism conference in the 'parallel universe'... just imagine, the CDC, AAP and local health department seated alongside members of the Autism Society of America, National Autism Association and everyone is having a civilized, professional and courteous discussion on such things as special diets, Methyl B 12 shots, nutritional and dietary intervenions, etc !!!! It was truly incredible to witness!

Major Kudos to Becky Grant-Widen , Holly Hagan Austin, Ginger Taylor (and her hubby, Scott) for putting this together and being such gracious hosts!

On a lighter note, I was able to unleash my alter ego, the "Ayatollah of Lobster Roll-AH" on the great state of Maine! Picture if you will, inviting competitive eater, Kobayashi to your 4th of July BBQ ... it is basically the same thing. :-)

Thank you for letting us witness a bit of Autism history...

Harry Tembenis

I noticed John Hopkins Medical University's name mentioned several times. There must be some GREAT ground breaking work going on there. In the wonderful magazine "Epilepic Advocate" there was an article written by Erin Stinson on the work they were doing at John Hopkins on diet. The article said that John Hopkins research showed two diets that worked for epileptics did very well on a modified Atkins low carbohydrate diet of 15 gram of carbs a day or on a modified low glycemic index treatment (also a low carb diet) They thought this would also be good for alzihemiers, stroke victims, depression, and autism. This diet is WAY better than the old Ketogenic diet even with the MCT oil. John Stone maybe your dragon had the come to Jesus moment: for nothing changes faster for God than a mind!. Not only that but the fact that there are so many more sick kids than ever before going to turn adults. I know my 23 year old son (His birthday is today, he is as excited about it as when he was 12) has started trying for SSI last year. Have some hope.

Congratulations to Becky Grant-Widen, Ginger Taylor and whoever else organized this meeting.

The Maine CDC (formerly the Maine Bureau of Health) is a separate entity from the federal CDC. The feds do not have oversight of them, it is State government. Julie Gerberding had nothing to do with this event.
All states would have a state health department that a similar event could be done under.

I encourage you to visit www.specterforthecure.com to see how together, with Sen. Arlen Specter we can unstrangle the cure and medical innovation. I have hope that the CAN Act will help to ease the pain of families across the nation.

www.specterforthecure.com

Wonderful news!

BTW, Martha Herbert has her own web site now.

http://www.marthaherbert.com/index.html

This is absolutely tremendous and wonderful.

Frieden moves from being health commissioner for New York City, the most draconian state on vaccination (as I understand it).

A false dawn in Maine, then?

Who knows? Perhaps Julie Gerberding made the gesture just because she is relinquishing responsibility. Just as Ginger Taylor's heady blog-post goes up the appointment of Gerberding's successor, Thomas Frieden, is also being announced. More years of state repression (to call it what it is)? We can only hope not.

http://news.yahoo.com/s/ap/20090515/ap_on_re_us/us_med_cdc_director_frieden

Wow, I have goosebumps on my arms and tears are running down my face. This meeting was an answer to my prayers. I now pray that we can have a real conversation all thru this country.

I got chills reading this, for once in a good way. Somehow, this story needs to get out to the national media.

This is very encouraging news!

Well put Tanners Dad. I will be agreeing with you in that prayer. And as I'm sure you already know, Jesus said "Again, I tell you that if two of you on earth agree about anything you ask for, it will be done for you by my Father in heaven. For where two or three come together in my name, there am I with them." Matthew 18:19-20

Thanks Ginger for your much appreciated advocacy efforts. And to your comment that we "may get to stop having to be a doctor and a lawyer and journalist and an activist and the town crier and just get to be a mom", I say Amen, Amen!!!

Wouldn't it be wonderful if this meeting could be used as a model for all the states cdc's. The message could spread one state at a time. The part about Dr Mills having a paradigm shift gave me chills. We've been asking Dr's for years to come to the DAN!s, but we would be more than happy to bring it to them! Thanks for starting my Friday with some hope! Maine...what a state..ayuh, grew up theya!

I will be praying. We have so many cracks in the ice there must be a break through soon. I can not imagine what a Doctor must feel looking down through the ice watching families drown. Lord, I know we have done this to ourselves. Please show us a way to unite and if it be your will help us recover our children. Open the eyes of those with narrow minds. Help them realize One child is one casualty to many. Amen

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